Aug 28, 2012

An Alzheimer’s Love Story: “Always in My Heart”

Feelings were simple for Ed those days. His mind did not delve into the complexities of emotions. The mixed feelings we can have. Suspicion about other people’s motives. I told him he was always in my heart.

Marie Marley
+Alzheimer's Reading Room 

An Alzheimer’s Love Story Always in My Heart
One morning Rosa, my best friend from San Francisco, was in town and was going to meet me at the nursing home for a visit with Ed, my beloved Romanian soul mate of 30 years.

Rosa and Ed had met each other but he hadn’t seen her for several years and I was pretty sure he wouldn’t remember her.

As I arrived and headed toward Ed’s room I was concerned about his mood and behavior, my constant worry when he was going to have company.

I was afraid he’d get angry and tell Rosa to go away. You just never know how a person with dementia is going to act in a given situation.

I’d debated with myself for days about having the visit with Rosa, but had finally decided to go ahead and give it a try.

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I was an hour early because I wanted to make sure Ed was awake and dressed. I pressed 4421 on the key pad and entered the Terrace hallway. The first person I saw was Janelle. I was delighted she was on duty that morning. She was my favorite of all the aides.

“Hi, Janelle,” I said as the door automatically shut behind me. “How’s our Mr. Ed today?”

“He’s feeling great.”

“Wonderful. He’s going to have a special visitor this morning.”

“Oh! How delightful! He loves company. He’s a gentleman, you know. I’ll get him all fixed up and looking like the gentleman he is.”

I sat down in the comfortable rocking chair in Ed’s room while Janelle showered, shaved and dressed Ed. She put him in a white shirt, tan slacks and his chocolate brown corduroy sport coat. He thanked her repeatedly and kissed her hand – one of his hallmark habits - as they came back into the room. He did look like a gentleman.

“A good friend of mine is coming to visit you today, Ed,” I told him.

“Oh! I’m delighted!” he said. “Is she your mother?”

“No, she’s a good friend. Her name is Rosa. Do you remember her?”

“Oh. Rosa,” he said. “That’s a lovely name. Is she your mother?”

“No, Ed,” I patiently answered him again. “Rosa is my friend.”

As if on cue, Rosa burst into the room. Wearing casual black slacks and a brilliant magenta blouse that matched her vibrant energy, her presence filled the room with an air of excitement. She had dark hair, even darker eyes, and constantly gestured with her hands as she talked, making it easy to guess she was part Italian. Emotional by nature – and culture – the visit was special for her. She wanted to connect with Ed at the deepest level possible, whatever his mental status might be that day.

Rosa sat down on the sofa beside Ed and turned to face him. They took off having a lively discussion, Rosa gesturing and Ed motioning with his own shaky hands. I was amazed. Ed was pretty lucid, except for his confusion about whether Rosa was my mother.

I realized it was going to be one of those precious times when, for some mysterious reason, Ed regained his faculties, if only briefly.

I watched them. Ignoring me completely, as though I were an inanimate extension of my chair, they suddenly stopped talking, held hands and looked at one another. They didn’t utter a word. They just held hands and gazed into each other’s eyes. Ed finally spoke. Like a child, he simply said what he was feeling.

“I’m looking at your face. . . I like it. You are so beautiful.”

“I’m honored to visit you,” she told him.

“Huh! I’m twenty times honored to see you.”

How can a cognitively impaired man come up with such a spontaneous emotional response?

Rosa moved to a folding chair and we arranged ourselves in a little circle - she in her chair, Ed on the sofa, and I in the rocker, which I’d moved over near them. We listened to a Tony Bennett song on a CD Rosa had brought for us. It was about two lovers who later became inseparable friends and cherished each other until the last days of their lives. Exactly our story. As we listened, Rosa teared up.

“It gives her tears,” Ed said, pointing to her face.

As the music continued, we all held hands.

After the music ended, Rosa fished her wallet out of her enormous purse and showed Ed pictures of her grandchildren. Then she related a recent talk she’d had with her granddaughter, Jennifer.

“I told Jennifer,” she said, pointing to the child in the photo, “that when you love someone they are always in your heart and you are always in their heart, even if something happens to one of you.”

She turned to Ed and said slowly and loudly, emphasizing each word.

“You’re always in Marie’s heart and she’s always in yours.”

“Ma-r-r-rie’s always in my heart . . . but I’m not sure I’m always in hers,” he said.

“Yes, dear. You’re always in my heart,” I assured him, putting my arm around his shoulder.

“Oh. I’m very happy to hear that,” he said.

Feelings were simple for Ed those days. His mind didn’t delve into the complexities of emotions. The mixed feelings we can have. The lingering doubts. Suspicion about other people’s motives. I told him he was always in my heart and that settled it for him.

We talked for another ten minutes or so, then Rosa left after numerous good-byes, hugs and kisses. I lingered. Ed said Rosa was a marvelous lady and asked if she was my mother. I told him once again that she was a friend. After another ten minutes I had to leave as well.

“When are you coming back?” he asked.

“Tomorrow,” I said.

I always said I’d come back tomorrow because it made him happy and I knew he’d never know the difference.

“Wonderful! Marvelous! I’ll be here waiting for you.”

And thus ended a beautiful visit with the man who was always in my heart.

Marie Marley
Marie Marley, PhD, was a caregiver for Dr. Edward Theodoru, her delightfully colorful, wickedly eccentric Romanian soul mate, for seven years. After he passed away in 2007, she wrote an award-winning book about their relationship, Come Back Early Today: A Story of Love, Alzheimer’s and Joy.Marie illustrates the solutions she found to 14 different difficult and painful issues that typically arise when caring for someone with dementia - everything from denial, diagnosis and
difficult behaviors to nursing home and hospice care. You can visit Marie’s website which contains a wealth of information about caregiving at ComeBackEarlyToday. Marie is a medical grant writer at the American Academy of Family Physicians in Leawood, Kansas.

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